Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Just Wanted To Introduce Myself, Glad I Found This Site!

Kat'sMom

Recommended Posts

Kat'sMom Newbie
Kat'sMom
Posted

I just wanted to introduce myself. Im glad I found this site & hope to learn alot & be able to help my daughter get through this.

I have an 11 yr old daughter, who has been diagnosised with everything from failure to thrive, IBS, Endocaprices, and even an eating disorder. However at her last GI appt, we saw someone new, she read all her history & asked if se had ever had a Celiac plate done.

Since she had not we spent several days last week doing tests, x-rays, blood work, etc.

Well it has been confirmed this is what she has. Kind of hit us like a brick. She's pretty thin for 11 (59 lbs) and pretty much is a "carb eater" loves mac & cheese, breads, cereal.

This is going to be HUGE for her to accept & eat right.

I see there are lots of good resources for how to find/make gluten free foods. So I will be pouring over them.

We still have to meet with her GI & they are sending us to a nutrionist. I told her I would let her get through Thanksgiving & then we will have to learn together how to do this.

Look forward to meeting/chatting with you all :)

~Jules

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. It will be hard for her at first, it is for almost all of us. You may find she is a bit tempermental for the first couple weeks as many of us do go through withdrawl but it will lift. You have found a great place for support and info and it may help her to join also and check out the teen section. There is a lot to learn, make sure all family members get tested also as there is a strong tendency for there to be more than one of us in a family and sometimes the symptoms are not as obvious as her's were. Ask any questions you need to and read as much as you can. I am so happy they found this in her at an early age. I have been celiac since about age 5 but wasn't diagnosed till I was in my forties. She is very lucky but likely won't feel that way right now.

purple Community Regular
purple
Posted

Hi and welcome! One thing to start getting the mindset right is to focus on what she can eat, rather than the negative, "can't haves". Give her positve choices so she can learn and choose for herself. Also get her involved in food preperation. She will learn lots that way and will be in control of what she eats. She will be more aware of what is in her food when she is not at home. Learn how to read labels together. Find a couple of yummy recipes for those moments when she feels bad...comfort food... like brownies or chocolate chip cookies. Stash some in the freezer...just for her ;)

When my 18 yr old started gluten-free this year, she was already vegan. She learned about all the bad ingredients in her food. She read labels and looked up ingredients on the web or asked me. I am thankful she was so interested and wanted to be healthier. You could learn about just one ingredient per week. Soon she will know what all the labels say.

Before we learned about gluten I was learning about all the junk in our food...long ingredient labels. The "stuff" in boxes and bags isn't food IMO. I still buy some but not like before. Like tortilla chips...corn, salt, oil...better choice and safer than those with lots of ingredients. Sometimes shopping is easier. Look at the cereal aisle...so long. Not anymore. Head for the Chex...and you are done!

One more thing. I planted my first garden this year. Consider having her plant a couple of veggies. She will learn so much and will enjoy watching her "babies" grow. She will get excited about healthy food. It is fun, rewarding, organic and cheap...really cuts down on the food bill!

ang1e0251 Contributor
ang1e0251
Posted

Welcome and I award your dr a gold star for being on top of things! I would add that if you can join a local celiac disease group, your daughter could have the chance to meet other kids like her. I imagine she might feel like the only one in the world with celiac disease otherwise.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,203
    • Most Online (within 30 mins)
      7,748
    Milarynn
    Newest Member
    Milarynn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...